Publications : American Indian and Alaska Native Health Disparities Center of Excellence
Creating zines about Alzheimer’s disease and related dementias for American Indian and Alaska Native youth caregivers
Background
In many American Indian and Alaska Native (AIAN) communities, family members care for elders with memory issues. AIAN youth are a unique and important caregiving group who may lack basic caregiving skills, as well as developmentally and culturally appropriate support and resources.
Methods
Grounded in community-based participatory research (CBPR), AIAN youth (n = 8) participated in talking circles to discuss their experiences caring for someone who has memory loss. They shared stories and reflected on their understanding of Alzheimer’s disease and dementia. Youth were invited to participate in two 1-h trainings on storytelling and zine-making and then invited to create a zine.
Results
The youth described changes in a person’s ability to take care of themselves or changes in typical activities as the first signs of memory loss. Youth shared how they helped provide care. Zines created by 3 youth depicted aunties and grandmothers with dementia and the importance of self-care as a young caregiver.
Conclusion
AIAN youth are an important caregiving group. Zines provide youth caregivers a platform to share their stories with other youth in their own way. Zines can be easily shared to support other youth ADRD caregivers who may struggle with the emotions of long-term caregiving for a family member.
Addressing the knowledge and recruitment gap in Alzheimer’s disease and precision medicine research among Native people: an innovative randomized controlled trial
Background
The American Indian and Alaska Native (AI/AN) population is increasing and AI/AN people are living longer than ever before. Although aging-related health issues such as cognitive impairment, dementia, and Alzheimer’s disease (AD) are becoming more visible among this population, reliable data on AD prevalence and risk factors among AI/AN people are nearly nonexistent. Concurrently, precision medicine (PM) has demonstrated significant potential for detecting and treating diseases such as AD. For PM to promote health equity for underserved populations, it must not exacerbate existing health disparities and bias in research. There is also little information about preferences among AI/AN people for communicating information regarding AD, PM, or recruitment into clinical trials. Communication barriers and few known facilitators contribute to low rates of AI/AN research participation. This study seeks to address the gaps in AD and PM research among AI/AN communities and promote knowledge of, attitudes towards, and interest and participation in AD-related PM research efforts.
Methods
We designed a three-armed RCT to determine the effect of a culturally tailored brochure and video compared to non-tailored recruitment materials. Participants were recruited in Rapid City, South Dakota and were required to meet the following eligibility criteria: 1) identify as AI/AN; 2) be able to speak, read, and understand English; 3) be aged 40 or older; and 4) have the cognitive and decisional capacity to consent and sign and date the informed consent document.
Results
We enrolled 914 in the RCT and 812 have been randomized to a study condition. The mean age is 54 years (standard deviation = 10.3 years); 62% are female. Overall, 22% reported a parent, grandparent or sibling have been diagnosed with AD, and 22% reported a family member with an other type of dementia. One quarter (25%) of participants reported having an undiagnosed memory problem themselves, and 22% reported having a family member with undiagnosed memory problems. Of randomized participants, 743 (72%) enrolled in the research registry.
Conclusions
This study will inform future recruitment efforts for ADRD-focused clinical trials. Enrollment of AI/AN participants in an Alzheimer’s Disease-Precision Medicine (AD-PM) Registry will provide opportunity for future research on this topic in partnership with this population.